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Caroline's mommy

New Here And Very Worried

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My 22 month old daughter hasn't been on the charts for weight since she was 3 months old. She was born full term at 7 lbs 6 oz, 19.25 inches and is now only up to 19 pounds and maybe 33 inches. Her first ped diagnosed her as failure to thrive and was going to call child protective services on me if she didn't gain weight, the 2nd said she was "just small" and her current ped said she is likely just small due to family history but tested her anyway. She eats like a horse, doesn't seem to have any specific food sensitivity, but has these HORRIBLY stinky, loose, smooshy BMs. Sorry if TMI, but we can see pieces of undigested foods in her diaper. I'm not talking just about corn, but pieces of fruit, raisins, etc. This morning I saw cherries from the chocolate cake filling she had last night in there.

Her doctor had her tested for Celiac via bloodwork, Crohn's, CF and all was negative. She doesn't have a distended stomach, doesn't react visibly after eating wheat, dairy or eggs and has never thrown up. She is feisty, aggressive but at the same time often very loving to everyone around her (especially at daycare). Dh and his mother are also very thin, small boned people, but I'm not ready to dismiss her very slight build to heredity because of her BM issue. Does it sound to you like she may be exhibiting symptoms of Celiac? Does anyone else know of anything else that may be causing the BM to be so loose?

Thank you for any help you can provide,

Erika

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What tests did he run (find out all of them), and tests that early can give false negatives and it would be worthwhile to retest in a year or two.

Additionally, you can TRY the diet for six months and see if she gains weight and there's a noticeable difference in her digestive "output" as it were. ;-)


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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I think the blood tests can be innacurate....they might not have run all of the tests either. When I was still eating gluten I got down to 94 lbs....I could see undigested food just like you described. It was everything I was eating...lettuce, veggies, cookies, crackers...I'd see a whole bowl full of rice as if I hadn't even eaten it. My doctor told me this was normal and happens to everyone. It wasnt normal. Now that I'm off gluten it doesnt happen anymore and I'm gaining weight.


Rachel

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Guest nini

It can be very scary watching your child go through this.

My daughter was also tiny... her bloodwork was neg. but I've also just found out they only did 2 of the 5 tests AND the tests can be inaccurate in a young child.

My thought would be that yes it could be at the very least a gluten intolerance and it won't hurt to try the diet and see if it helps. However, if you want her tested in the future keep in mind the Dr. will want her back on gluten for testing. Personally, I'm not a big fan of Dr.s, I think most of them miss the boat on Celiac and gluten intolerance and there is still so much they don't know.

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Just a thought... if your husbnd and mother in law are "thin, small boned" they may also have celiac disease. Your smart to pursue testing for your daughter... I believe in mother's intuition!

PS My blood tests were all negative -- which lead to lots of unnecessary testing for other conditions. Thanks to my gastroenerologist he highly recommended the biopsy which confirmed his celiac disease suspicion.


Ruth

Diagnosed 3/03 (Positive Biopsy/Negative Blood Tests)

Daughter dx 12/03 (Positive biopsy/Positive blood tests);

Two sons (Negative blood tests); One on gluten-free diet (6/04) ... cured his persistent, severe headaches.

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Well, that was one crappy dr to threaten child protective services before suggesting parenting classes or a visit with a nutritionist. Why jump to the worst conclusion...you're deliberately starving your child? Testing of young children is unreliable, so the dr who ran tests wasn't on the ball so much, either. Try the diet. Must be 100% gluten-free in order to be beneficial. Here are some sources of good bread products. All are tasty and make life very much easier for a typical mom with a typical child.

http://www.kinnikinnick.com/

http://www.chebe.com/


I believe in God.

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Your story sounds somewhat like mine. My daughter was and still is very small. We actually have no small people in our family, so it always weird to us. She was tested for many different things, including celiac disease and all came back negative. They then told us that Ella had a psychiatric disorder and should be on medication for OCD. We decided then to just try the diet since I felt as though she had many of the symptoms of celiac disease even though she tested neg.

Ella has been on the diet for a little over a month and the change in her has been nothing short of a miracle. She is a totally different child and we are enjoying her so much!! Her stools are more normal now, although there is still room for improvement and her hair loss is getting better. The biggest difference in Ella is that she is so much happier because I think she feels so much better. We noticed a change in her within 3 days of being on the diet.

Good luck to you whatever you decide to do. I know how hard it is to watch your child suffer. I hope you find the answers to what is wrong. I think trying the diet would be a good idea...after all, it can't hurt anything!

Good luck,

Shannon

Ella 2 1/2 years old

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I think at the very least it is gluten intolerance. I would seriously consider the gluten-free diet to see if there is a positive dietary change.

Also, have you had her thyroid checked?

If it is financially feasible, perhaps go through the Enterolab testing. I have heard wonderful things about Enterolab.

Good Luck!

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

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Guest taweavmo3

Sounds like so many of us here on this board....going through several pediatricians!!!! We are currently on our third doctor also, and not thrilled with the new one, but I am sticking around for a bit, since he's a young guy and seems more willing to learn.

I second what everyone else said.......give the diet a try. You should see results pretty quickly if it's a gluten issue, despite what the bloodtests say. We were lucky enough to get a + diagnosis, but that was only when my daughter was 3 and had been sick for a very,very long time. I wish I had known better when she was younger, I would have just put her on the diet. She has developmental delays now and it will take a long time to catch up. The weight gain stopped first, then she stopped growing. Height seems to take the longest to catch up....she is 3 1/2 years old is only 33" tall. I too heard "she's just going to be small" for AGES.

Another thing I would look at for your little girl, if you haven't already, is dairy. My 17 month old has horrible stools if he has any amount of dairy. Even a piece of cheese will wreak havoc on his little tummy. I'm nearly certain he has celiac too, but he hasn't yet been diagnosed. My daughter had the same dairy issues, but after 6 months gluten-free, she can handle a small amounts again. So, if you cut out gluten, look at cutting back on dairy as well.

Good luck........this board is by far the greatest tool to anyone on the gluten free diet in my opinion. I have had nearly every question answered, there are so many experts who've been doing this for years. I hope you get your daughter well soon, and are able to see some chubby cheeks again! If it is celiac, or at least a gluten intolerance, you will be amazed by the changes.

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I am so sorry your having to go thru all of this...It is so fustrating when you know there is something and it cant be pinned....I am sure they have done this but do you know if they have tested her stool for C-Diff...I dont think that is how you spell it but that is what it sounds like...Jacob mainly wasnt playing at all or growing and throwing up but all of a sudden he started having the same type diapers that your talking about...I have never in my life seen anything like that....Now he does have Celiac but they didnt find that out until after this...When his stool came back positive for C-Diff they gave him a antiboitic and it went away...The throwing up didnt!!!

You may take your child to a Gastro and get them to do a Biopsy....They never tested Jacob's blood until after he was diagnoised with Celiac...Now they test it ever month...We go back on the 13th and if the numbers are still low they will do the test every 3 months instead of every month...

If I were you I would try the gluten-free diet...It wont hurt....

Good Luck and God Bless you and your family....


Brandi

Mommy to Jacob gluten-free since March 2005

Mommy to Peyton...Allergic to NUTS and Asthma

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